Research

Our research operates within the philosophy of the Carers Federation – to go the extra mile in all aspects of its operation, to treat people with dignity and respect, recognizing that:

“People don’t fit in boxes”

Thus, research activity will continue to grow and adapt according to identified need and will remain non-profit making, using any surplus monies for the benefit of current and future research projects and initiatives.

Key research objectives

  • create a research database
  • establish and maintain academic and clinical partnerships
  • set up a respected and effective Research division of the Carers Federation

Research within the Carers Federation was established in 2005. At that time, Carers Federation was delivering Independent Complaints Advocacy Services (ICAS) and imprisoned patients were about to become NHS patients for the first time.

Carers Federation was asked, by the then Secretary of State for Health, to design options for a national programme to enable ICAS providers to deliver their services to prisons.

The research project reported to the Department of Health (DoH) in March 2005 and delivered a:

Detailed understanding of how ICAS can operate within a prison setting taking into account different security status and special needs of prisoners.

Research Areas of Interest

We are committed to all research that advance understanding and lead to improved services to individuals and communities. Currently, our own research largely concentrates on the following areas:

  • Advocacy
  • Carers, service users and patients
  • Personal budgets
  • Prisoners

Within these important fields, we are actively working in order to promote rigorous, comparable policy relevant to research in order to monitor and evaluate effects of current policy and lobby for new evidence- based services

It is also our intention to provide resources to:

  • Support new research within the Carers Federation and establish the policy and procedural framework in which this takes place.
  • Share information about research ideas, live studies and useful previous work and an opportunity for staff members to share information and support.

Research is considered by the Carers Federation to be an emergent and highly valued part of its work. It has subsequently been determined to develop its work still further by establishing a Research Arm to the Carers Federation.

Carers Federation Research Reports

Advocacy

Public opinion on the proposed advocacy function of HealthWatch (Richardson et al, 2010). The researchers designed two surveys, one for clients of ICAS, and one for ICAS stakeholders, to elicit responses that would enable the researchers to identify critical functions necessary to run a successful advocacy services, as well as to gauge public opinion on the proposals for HealthWatch to provide advocacy services in future.

An online survey was sent to 4,433 stakeholders and a consultation event was held at the Leeds Royal Armouries on 21st September 2010, with both ICAS clients and stakeholders present at the meeting. An interim analysis of stakeholder and client survey feedback allowed the researchers to develop a set of questions to stimulate in-depth debate around the proposals to move advocacy services to the auspices of HealthWatch.

Carers, Service users and patients

In 2013, Carers Federation was commissioned by The Community Programme to examine ways to improve information gathering and sharing amongst frail older patients and their carers in Nottingham/shire.

The final report Patients are more than a collection of symptoms: a short study examining information flows for frail older people and their carers in Nottingham/shire (Barker, 2014) was published February 2014.

In the initial phase of this work a Carers’ Focus Group was held and this informed the in-depth patient interviews to follow with 20 frail older people risiding in Nottingham/shire.

Five main carer themes were identified:

  1. Anxiety – Carers said that they were anxious about passing on their information to professionals and what might be done with this.
  2. Legitimacy – there was a general level of confusion throughout health and social care systems about what / who are legitimate information sources for the patient / cared-for.
  3. Poor communication – participants argued that there was a need for improved information gathering. They felt particularly that doctors understood little of carers’/patients’ lives beyond their medical condition.
  4. Professional carers – referring to carers’ belief that they took on numerous professional roles and, if they had not done so, the patients’ medical journey would have fallen apart.
  5. Resistance to being labelled frail, elderly or old – participants said that their elderly relatives would not refer to themselves as such. Some would take serious office at hearing themselves described in such terms. The language used throughout this study was modified accordingly.

To read the patient interview themes, conclusions and recommendation arising from this study, please assess the study.

Personal budgets

Between September 2011 and January 2013 the Carers Federation funded a study with the objective of making a productive contribution to the emerging knowledge base about carers and personalisation by exploring a hitherto under- researched key issue – the carer-service user relationship.

The focus was on developing better understandings of how a change in a service users’ social care arrangements to a personal budget affects the carer-service user relationship. The rationale for this focus was:

  •  the centrality of this relationship to the delivery, quality and experience of care in general and within a personalised approach to service delivery
  • the few studies that have been carried out indicate that personalisation can change this relationship . Given that this relationship is at the heart of the caring process, these changes require further exploration in order to ensure the successful implementation of personalisation
  • personal budgets will impact on the lives of an increasing number of carers

The study was carried out in collaboration with De Montfort University, Leicester and was designed to address some of the limitations of existing studies about carers and personalisation in that it focused exclusively on exploring carers’ perspectives and was carried out in several different local authorities. The first stage comprises 23 semi structured interviews with carers in 11 English local authorities who were in a long-term dyadic relationship with an adult in receipt of social care who had changed to a personal budget.  The report can be accessed here.

Prisoners

In February 2014, Julia Tabreham, Carers Federation Chief Executive published her PhD thesis, Prisoners’ Experience of Healthcare in England: Post-transfer to National Health Service Responsibility .

This seven-year study explored whether imprisoned patients had achieved ‘equity’ with the experience of patients in the general population.

Research data indicated that, “despite considerable policy focus and activity, the lack of integrated service commissioning means that equitable provision for this prisoner population has not been consistently experienced by imprisoned patients. In its absence, prisoners have themselves adopted the role of carer for the sick and frail amongst their prison communities. These individuals report that they undertake these caring roles unsupported by the NHS and/or the Prison Service, whilst at considerable risk to both themselves and the person for whom they care” (Tabreham, 2014, p.5).

If you or a carer you know have any specific information or communication needs and require information about our services in an alternative format please let us know.  Contact us on 0115 962 9310